UCEDD CPCUniversity Center for Excellence in Developmental Disabilities – Community Partners Council

I am Kathleen Humphries, the new director of the OHSU University Center for Excellence in Developmental Disability. Oregon is not entirely new to me; I went to the University of Oregon, as did several of my sisters and my father. I have family still in the Portland area, which has made my transition even happier.

The job of the UCEDD in any state is to provide leadership to the training, technical assistance, research, and dissemination of relevant programs, materials, and services related to developmental disability.

I come to Oregon from Montana and 13 years in residence at the Rural Institute, Montana’s thriving UCEDD. At Montana I was involved in all of those UCEDD activities as a research project director.

The UCEDD at OHSU has a long successful history under the leadership, most recently of Dr. Don Lollar, Dr. Melanie Fried-Oken and Dr. Gloria Krahn. I hope to continue their good work while strengthening the UCEDD in areas where my skills and abilities are needed for future growth.

Ms. Rhonda Eppelsheimer served us as interim director in the spring and summer of 2014 during this most recent leadership transition and will stay on as a valued part of the leadership team in the role of Assistant Director.

I am a strong believer in the value of the partnership between the UCEDD servant leadership and the CPC community board. I expect that the relationships will deepen and the work will do together will expand and will reflect the changing landscape of disability in Oregon.

Ableism – Assuming everyone is able bodied, and designing the world accordingly.

There are many things that define the person I am. I’m biracial. That being said, I believe the most significant is that I was born with Cerebral Palsy (CP). People don’t always have a clear understanding of what it means to be a person with a disability. (PWD) I believe that everyone has strengths and challenges. The difference between people without disabilities (PWOD) and myself is that because of my documented disability, I have access to community resources to help support living my life to greatest potential. This concept is subject to interpretation. For instance, one morning while in a church, I was cornered by a guy in the restroom. He looked at me with concern and asked if he could pray for me. It was an odd request, but I wasn’t one to turn down prayer. He placed his hand on my left arm and started praying for the healing of my arm and then the rest of my body. Don’t get me wrong, I appreciated the sentiment, but I couldn’t help thinking this was the weirdest thing in the world.

I can’t lie and say that it never bothers me not to be able to do things in the same way as my non-disabled friends (it would be much easier to change my bed sheets, for example). However, I have pretty much accepted the way that things are.

Because of being biracial, Racism has been a subject that people have asked me about off and on throughout my 37 years of life. Notably, to the best of my recollection, I have not been discriminated against because of my race. Then again, it’s hard to know if it never truly happened when I was young, or if my parents were successful at sheltering my siblings and me from it. This is of great importance to me because my parents were very intentional with making sure race was to a certain extent a non-issue. All three of us siblings are of biracial decent. My parents are both of European/white decent. Yes, for those who haven’t put the puzzle together, my siblings and I are adopted. The similarities between Racism and Ableism are palatable. For the purpose of this, I’m going to maintain my focus on Ableism.

Make no mistake, I have for many years and continue every day of my life, to be discriminated against because of misconceptions with regards to my abilities. It is something that I deal with at least a couple times a month. I tell people who ask that most of the time my CP is not the barrier: it’s the attitudes that people have surrounding my disability.

I am writing this not because I want sympathy–though I admit it is much harder to change my bed sheets than most– but rather as a short commentary on social change: yes, we have made progress on educating the public of what disability is, and more importantly, what it is not. However, we still have a long ways to go before people with disabilities are seen in the same light as their non-disabled counterparts. For this reason, I continue to advocate for the rights of persons with disabilities and I invite you to do the same.

Before closing, I want to give you another example of assumptions people make with regards to people with disabilities. In this example, I want to illustrate how education can facilitate opportunities for PWD.

I was on my way home and there was a mom and her 22 month daughter sitting across from me. I listened to her tell the bus driver about how she and her partner recently learned that her daughter has Autism. The mom went on to explain that when her friends found out about the diagnosis, their initial reaction was one of sympathy, but that in her mind it wasn’t something to be sorry about; it was good to have a reason for her child’s level of performance and development. Being a person with a disability, and being well-educated, has helped to raise awareness for the inclusion and acceptance of people with disabilities within our communities.

In closing, I want to encourage you to come along side myself and the CPC to focus on all peoples strengths instead of their challenges. It’s only through working together we can assure the end of Ableism and inclusion for all.

Hello! My name is Rhonda Eppelsheimer, and I wanted to share a little about my work with the OHSU UCEDD, and with the CPC!

As Assistant Director for the UCEDD I work with members of the CPC a lot. I am very thankful for the voice the council brings to our daily work here at the UCEDD. The work of the CPC keeps the UCEDD firmly grounded in the communities and concerns of people who have disabilities across Oregon.

Working with the CPC has helped guide my work in a variety of ways. I work most closely with a CPC group that focuses on spirituality and disability. They have a deep passion for making sure people who live with a disability have access to, and are included in, their communities of faith and/or spiritual practices. The group members share from their own lives and the lives of others they know. This group wants to make resources for people with disabilities, their families and supporters, and communities of faith.

This group’s passion helps to shape the UCEDD’s long and short term goals and projects. The group focuses on education, community service and training, research and information dissemination. With their help, we are making a website resource page and creating mini grants that will support the larger community and increase their ability to respond to the spiritual needs and practices of Oregonians with disabilities.

I enjoy my work with each member of the Council and see our work together as a strong partnership. This provides us direction and connection to carry out the work that helps make a difference in the lives of people here in Oregon.

As I get older, I ‘m reminded that we has individuals can’t change the whole world.this being said,this makes it even more important for us to join together as colitions to do everything we can to do to make as many changes in our little part of the world.

I’m an life long aadvocate for people with disabilities. I have a passion for connecting people with disabilities and people with disabilities. I have always been part of both worlds. I have found it both rewarding and challenging. It can be so overwhelming. I try not to let it bother me. I have heard the saying,,” If you’re not part of the problem, you need to be part of the solution.”. I make every attempt to live my life by this shis school of thought! I want to encourag you all, who readingthis to do the same!!

About now, we are all probably tired of the campaign speeches! But, did you know that 100 years ago women in Oregon were campaigning for the right to vote?? The issue was on the ballot for about the 6th time in 1912. Of course, only men could vote, but luckily they finally realized women weren’t going to stop trying. Oregon women were able to vote before the national women’s suffrage passed in 1920. In recent weeks, I’ve heard several people say they don’t “like” anyone running, so they aren’t going to vote. Well, friends, many people across the globe do not have the right to vote. We need to use ours! We can now register online (by October 16) and we vote by mail! How easy can it get? And, we can read up on the candidates and issues. The Oregon League of Women Voters has an excellent website-LWVOR.org-where we can download or order Voter Guides in lots of versions! In a few weeks, we can get a voter guide in standard or large print, Easy Voter (meaning it’s in everyday language), Spanish, video, audio, and screen reader accessible. You can also order a Braille version by calling 1-800-452-0292.

I admire the following political parties: Liberals, Greens, the New Democrats (the New Democratic Party,) Animal Alliance Environment Voters Party of Canada,. I support voting rights, affirmative action, welfare, homeless individuals’ rights, first nations peoples’ rights, immigrants’ rights, and serious consideration of statehood for each-and-every territory, holding, district of the United States of America that-of-which is not already a state. I am fluent in English language. I know some Spanish language and some American Sign Language language. I am eager to enhance all of my language skills. I enjoy studying all cultures, languages, geography, geology, ecology, environments, linguistics, sociology, political science. I have a Bachelor’s Degree in Political Science from Hope College, in Holland, Michigan, U.S.A.. Hope College is a private liberal arts institution of higher learning. I am from Glen Ellyn, Illinois; Wheaton, Illinois; & Wilsonville, Oregon. Also, I have spent a considerable amount of time in Holland, Michigan and Lake Oswego, Oregon.

This year has been a busy one for me. Along with fellow CPC member, Josiah Barber, I attended the Partners In Policymaking seminar. It was held one Friday/Saturday per month from January through June inSalem. Conducted every two years, and funded by the Oregon Council on Developmental Disabilities through The ARC Oregon, the coursework trained participants in the areas of: Disability History, Person Centered Planning, Negotiating, Challenging Behavior Strategies, Grassroots Organizing, and State Legislative Testimony. 24 parents of children experiencing developmental disabilities, along with five adults experiencing developmental disabilities, were chosen from 80 applicants. The education I received will enhance the volunteer work I do with through both United Cerebral Palsy of Oregon and the Community Partners Council. I believe families and adults in the disability community need each others’ support and need to connect more through the broader community.

Occupying much of my volunteer time, this spring, has been working on the steering committee for Oregon’s new coalition of advocacy groups for people with developmental disabilities. Its first statewide meeting has occurred and the mission statement is completed. Tasks remaining include bylaw revision and election of officers.

Effective July 1, I will be rotating off the CPC’s Executive Committee, but will continue my work on various committees. Congratulations to continuing EC members, Joe Basey and Emily Holmes, and newly-elected members Heather Brooks, Beth Brownhill, and Rob Wiesenthal!

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